Tag Archives: cerebral palsy

I’ve been meaning to write more frequent blog posts. Life has gotten in the way in the form of being seriously short staffed where Michael is concerned. Right now I have two R.N.s and my sister, who does have experience with hospital and in-home care. With Michael out of school, we’re running two eight hour shifts per day. This means I have to pitch in as well. I’ve had to take four of the eight hour shifts, three 6:30 a.m to 2:30 p.m. and one 2:30 p.m. to 10:30 p.m.

Michael takes seven different medications. He needs at least two breathing treatments per day which include nebulizer treatment followed by three timed sessions with a percussive therapy vest. Diaper changes can be quite laborious depending on the nature and quantity of his output. Michael is twenty years old, close to six feet tall, and weighs 145 lb. He’s on the gangly side, so rolling him from one side to the other requires considerable effort.

In the morning I fully expect to need Naproxen, if not my carefully hoarded stash of Vicodin. I’m hoping the Vicodin won’t be necessary because I have an hour’s drive ahead of me in order to attend a writer’s group meeting.

Adding to my joy this week is a breakdown in communications with the supplier of my antidepressant medications. I did get an interim prescription for one of them from my doctor, but there’s been more difficulties with the other prescription. Tomorrow will be Day 3 without Pristiq. I will either be what some people might consider manic, or I will have no patience with obstacles and no filters in place to moderate my reactions to such obstacles.

Not really the best frame of mind for giving critiques in a writer’s group setting.

On Sunday we interview yet another R.N. I’m really hoping she turns out to be a keeper. We’re stretched mighty thin. Summer school starts next week, but we still need a third R.N. to take some of the load off of my sister.

All of this leads me to think about what we’ll be facing once Michael is no longer in school. He has two years left in the County program. Then we’ll have to find other ways to get him out of the house and keep him occupied so he doesn’t languish in bed for the majority of his day. That’s not good for his mental or physical health.

Life is hard when you have one special needs child. Life gets exponentially harder when you have another child, especially when that child turns out to have special needs also.

The thing that makes life unbearable is when you run into the family member who knows more than you do about everything. This person isn’t a doctor, a nurse, or a therapist of any sort. This person might have teaching experience, might have volunteer experience, might even have some experience of special needs with his or her own child.

It’s bad enough that as a mother I’m under my own constant scrutiny, watching to see if I’m doing what the doctors and therapists tell me to do so my sons will grow up realizing as much of their potential as possible. It’s bad enough when people who mean well but who have no real idea about daily life in a special needs household come to me with questions or suggestions that I know won’t work, I’ve tried and modified, or found effective five years ago. Right here, right now, I know what’s best for my sons. Why? I’ve devoted my adult life to finding out.

What really hurts, what goes so deep that the emotional bruising lingers for days, is when a family member decides to tell me I don’t know what I’m doing, I’m doing it wrong, or I’m just doing nothing. Yes, that’s right, just the other day I got a lecture on what a lazy, careless, thoughtless, inconsiderate mother I am.

Every mother knows how much this kind of attack hurts. No matter how hard we try, there’s always that little nagging voice inside us that sees what we don’t do. The greater effort we could have made. The times when we were selfish enough to give ourselves a break.

One of the people I ought to be able to count on for support has just hit me where I live. This person does not have a sterling track record in the parenting department, but if I dare point that our then I’m just being cruel and trying to dodge the real issue.

The nice thing about people you hire to work with your children is your option of firing them when the time comes. You can’t fire family. Blood is blood, even when there’s a strong temptation to spill some.

We’re down to two R.N.s again, and one is on vacation. My sister has been working too hard and wound up with an injury. We run on a pretty slim staff as it is. When Chris and I have to spell each other taking care of Michael, it’s hard on everybody. More stress in the house isn’t good for any of us, especially both Michael and John.

With that in mind, I’m re-running this blog post.

by Lillian Csernica on June 29, 2013

I’m seeing a really alarming trend in the news lately. There are more and more reports of teacher and aides abusing special needs children. The very people we’re supposed to trust with the safety, care, and education of our learning disabled, medically fragile, and behaviorally challenged children are bullying them and physically abusing them. This has raised awareness to the point where parents are calling for surveillance equipment in the classrooms to make sure more special needs students don’t suffer at the hands of people despicable enough to abuse their powers of authority.

My younger son John is autistic and has in-home aides who help him after school. Such aides come to us from the care agency which is contracted with the state agency who pays for this service. I’m here to tell you that some of the people sent to us by this agency shouldn’t be put in charge of blowing their own noses, much less taking care of a special needs child. One particular aide John had was a sneaky wretch. She was all smiles and shipshape manner in front of me, but I found out from one of the other mothers at the park where John played that this aide grabbed his arm and shook him, or she’d drag him around by the arm, and this was before John did anything that might merit strong action.

The day I fired this woman, she stood there in my living room ranting for ten minutes about how the situation was all my fault. Not until I told her I was about to call the police would she shut up and get out. I informed all of the mandated reporters I knew about this aide and made it clear to the agency how she had abused my son.

Caveat emptor, my fellow special needs parents. Just because the state and county agencies say they’ll provide a one to one aide either in school, at home, or both, don’t take whoever they provide at face value. You would not believe some of the horror stories I’ve heard from other parents about the kinds of people who go into home care, both as nurses and as aides. Regarding aides, it’s often more or less unskilled labor provided by somebody old enough to make sure the child stays out of trouble and can call 911 if a medical crisis occurs. That’s not good enough!

Many parents don’t know the right questions to ask, especially when they’re still coping with the shock that follows realizing their child may have special needs. Many parents aren’t familiar with all of their rights in regard to what they can ask for, and how they can go about making sure the school district provides it. When Michael reached an age where he could enter the school system, I really wish I’d had somebody there to tell me all the details and guide me through the decisions I had to make. With these concerns in mind, I’d like to offer this list of helpful and informative links:

If I didn’t keep a running To Do list, I don’t know how I’d get anything done. When I’m stressed out I tend to lose my long range focus and the ability to structure my time effectively. I’ve done a lot of my shopping online this year. The rain coming down in buckets outside my window makes me very happy for that option.

This year has been such an ordeal for our family. I decided back in November to pay attention to all those articles on managing holiday stress and choose the activities most important and meaningful for both me and the boys.

Here’s what got checked off the To Do list this weekend:

On Saturday night I took John to “The Nutcracker.” He’s been asking to go tothe ballet for a month or two now. We know he enjoys seeing and hearing a live orchestra perform. I think the main attraction of the ballet was A) the costumes for this particular show and B) the emphasis on all those pretty girls with their long legs.

The Santa Cruz Ballet Theater put on a marvelous performance. Hearing Tchaikovsky played live was a treat in itself. The production values and the special effects left both me and John wide-eyed with wonder. As for the dancing…. Wow. The Snow Queen and her Cavalier made it seem like gravity had no power over them at all. This was the first of John’s Christmas presents. He kept saying it was “Amazing!”

John and I had dinner on Pacific Avenue after the show, talking about our favorite parts of the show. Despite the 40+ degree weather, we stopped in at Cold Stone Creamery for some dark chocolate peppermint ice cream. Oh my stars and garters. That was heaven on a spoon!

Today Chris and John got our Christmas tree. It’s become a tradition for the two of them to go to a tree farm and cut down a fresh tree. I had to admire their determination. Soon after they left, the skies darkened and it started raining. They did return victorious, if a little damp.

John has graduated to stringing the lights on the tree himself. He loves the colored lights that blink on and off and change colors in varying patterns. Out came all the boxes from the garage with our wide variety of Christmas ornaments, table linens, and John’s personal treasure, his Peanuts cuckoo clock. On the hour, Snoopy comes out where the cuckoo would be and the Peanuts theme song plays. We put this up only during the holiday season.

Once the lights and gold tinsel garlands were in place, Michael sat in his wheelchair to help choose ornaments and where they should go. As each of us pulled the tissue off an ornament, we’d hold it up for Michael to see and ask him if that one should hang on the tree. Once he gave us his yes or no, then he’d pick the right spot on the tree. After spending two months watching Michael lying there in his ICU bed, I cannot tell you the joy I felt seeing him sitting there happy and smiling, reaching out to touch an ornament or grab John’s shirt and make him laugh. Michael’s R.N., a wonderful lady named Joan, had a good time helping with the ornaments. They were all new to her, so I shared some of the stories attached to them.

Here it is, courtesy of Michael and John!

As for me, I put on a Christmas jazz CD and drank eggnog. All of a sudden, there it was. Our family gathered around the Christmas tree, breathing in the fresh pine scent, joking about hanging the good ornaments up where our three cats can’t get at them. My mother is visiting my brother right now, but she’ll be back for Christmas Eve. My sister is down in Southern California, but she’ll be back for New Year’s. It’s good to have time with just us and the boys.

In my family we party a lot during the holidays. My birthday is December 29. My sister’s is on January 1st, and my mother’s on January 3rd. I keep careful track of who gave who this or that Christmas present, along with who gave who that birthday gift. Lists! More lists! One of the traditions I consider most important is writing thank-you notes. Michael likes to create his own stationery, and John will add little drawings to his cards.

We have so much to be grateful for, and so many people to whom we owe our thanks.

The holiday season has come round again. It’s a stressful time for any family. In a household where we already have all the demands of the special needs lifestyle, the additional claims on our time and sanity increase exponentially.

To show my support for all the caregivers who come under the heading of Family, I’ve rewritten The Twelve Days of Christmas to reflect the holiday season from our point of view.

The holiday season is here and we’re all out there in the stores or at home shopping online. The grandparents, aunts, and uncles all want to know what they should get for that special needs child.

The key word there is child.

I’ve been browsing through various holiday shopping guides for special needs children. Most of them address the needs of children in preschool through elementary. I spent considerable time rephrasing my search keywords until I started to find guides that are useful for teenagers and the kids who are on the edge of becoming adults.

As the mother of two teenage boys with very different sets of special needs, one of the toughest questions I have to answer is, “What should we get for him?” Our extended family looks to me to know what subjects the boys are interested in, which specific items the boys want, and of those which ones the boys will really get some use out of.

Michael’s physical limitations are a key factor. Fortunately, he’s become fond of fashionable clothing and keeping his hair in a good cut. He also likes classic rock and roll along with some country and western music. Audiobooks are now a good option for him. He’s always up for new art supplies.

Some people think it’s strange when I say it’s so much harder to shop for John. He’s verbal, he has the same physical skills other teenage boys have, and he loves electronics. No problem, right? John has a closet full of toys he never plays with. He’ll get fixated on a particular subject for a month or two, then abandon it and move on to something else. Then, a year or two later, he’ll come back to that first subject and get fixated on it again, but at a different level of cognition and application.

I know how hard this can be. I know the frustration of seeing what your child can’t have because of what he or she can’t do.

Here’s a list of links that will take you to the holiday guides where I’ve been looking for gifts for my boys. I hope this information helps you make your kids’ holiday wishes come true!

Michael and I are back in the UCSF Benioff Children’s Hospital Oakland. On Monday Michael’s R.N. noticed some swelling around his Baclofen pump. By evening a redness had developed. I called the surgeon, who told us to come to his Oakland office by 8 a.m. the following morning. We did, and Dr. Sun made space in his surgery schedule for Michael. That was a very good thing, because by then the pump area had gone all hot, red, and shiny. That meant infection.

Both the Baclofen pump and the catheter leading to Michael’s spinal column have been removed. The infection is being treated with antibiotics. Another problem is figuring out just how much Baclofen Michael must now receive via his G tube. That means Michael has to deal with at least some degree of Baclofen withdrawal, which is very unpleasant.

So Michael is back in the PICU. On the plus side, many of the R.N.s are familiar with him thanks to our spending most of the summer here. The social workers got me a room in the Family House right away, so I have somewhere comfortable to eat, sleep, and shower. I’m just happy we got Michael to the doctor in time. The last thing Michael needs is to become septic. That led to organ failure last time, so we cannot risk having that happen again.

Keep us in your prayers, folks. It’s just one day at a time until we’re out of here.

Today Chris took Michael in to have blood drawn so the doctors can see if his kidneys are still improving and the new diet is providing correct nutrition.

Tomorrow I take Michael to the specialist who will check his muscle tone, adjust his Baclofen pump if necessary, and decide whether or not Michael can return to school on Monday.

Tomorrow is also the day I see my therapist. Thank God she’s willing to do a phone session.

I just got email from John’s teacher/caseworker offering me four dates and times in the next two weeks for John’s annual IEP. Today is Wednesday, right? The first of the four choices is this coming Monday. I need notice, dammit! We run on some very tight schedules around here.

The second date doesn’t work because in order to attend the IEP Chris has to take a day off of work. The second choice is a week from today, also a Wednesday. Taking a day off in the middle of the week causes problems.

The third choice is the 19th, which doesn’t work because I’ll be packing for a week away from home.

The fourth choice doesn’t work because I will be on a plane somewhere over the Pacific Ocean.

On the 16th I have a doctor appointment.

On the 26th Michael has a checkup with his gastroenterologist, whom we kept up to date on all of Michael’s travails during his two months in Oakland. I should be at that appointment, since I’m the one who was at Ground Zero for all the hospital events, but I will still be away from home.

And the 31st is Halloween, of course, which is one of John’s favorite days of the year. One of mine as well, because I really do enjoy seeing the costumes and giving out candy and/or little toys. It will be nice to end this month on a festive note.

The 31st is also my deadline for two 2500 word short stories that must be set 30 days apart and relate to each other in some way. I have a roughdraft on the first story. I’m 1/3 into the second story. There will be no doing five drafts per project on these. I’m going to have to slam them out and hope for the best.

Think happy thoughts for me, my comrades-in-stress. How do you folks handle this kind of high intensity scheduling?

Yes, it’s true. We were discharged on Monday. Michael is looking good. He needs to gain back the weight he lost in the hospital, and he tires easily, but he’s in good spirits and that big grin is back. We’ve had to replace his ketogenic diet with a formula that’s easier on his kidneys. The nephrologist would like us to wait six months for full recovery before putting Michael back on the ketogenic diet. He’s now on one additional anti-seizure medication which seems to be working. He’s had a few very brief seizures, but nothing beyond the frequency and intensity he was experiencing before he went to the hospital.

I’m not good for much this week. I’ve been reading and sleeping and binge-watching the first season of “Grimm.” I’ve seen the occasional random episode of the show, but I’d never gotten the whole story.

Chris hired a new nurse. We need her, because we won’t be sending Michael back to school for at least two weeks. It’s always a little strange having somebody new in the house. On her first day, which was also our first day at home, the upstairs shower decided to just keep running no matter how I turned the faucets, even with pliers. I thought I was going to have to start bailing out the bath tub through the window, but Chris managed to get a plumber to the house within ten minutes of me calling about the potential disaster.

Never a dull moment. I think I might have that engraved on my headstone.

School is in, the neighbors are behaving themselves, and the cats are very happy to see me. Every night there’s a competition to see who gets to sit on my lap as I lounge on the couch watching Netflix or Amazon or Hulu. Now that I’m back, all is right in the feline universe.

I have two ten-page stories due by the end of October, then NaNoWriMo starts. I worked on two or three new short stories while I was in the hospital. I took a few big blank notebooks with me. If I wasn’t writing in my personal journal, I was making notes or writing some piece of fiction. I’ll have to devote a post to what happened as the hospital staff got to know me and word spread about me being a “real writer.” Even in this digital age, some people still have what borders on superstitious awe toward those of us who can make the words keep coming.

Michael has surgery on Wednesday morning. Bright and early, and when I say early I mean I’ll be up at 3 a.m. prepping him for the 5 a.m. departure to the Oakland Children’s Hospital. The anesthesiologist wants him to have a breathing treatment before we bring him in, along with his regular meds. Wrestling my poor boy into his percussive therapy vest at that hour will be hard on both of us.

Then we board our van for the long drive. Caffeine will be essential. Given my sleep patterns, I will probably just skip my insomnia meds and go for the long haul. I’ve pulled overnighters before for Michael’s sake. The fight-or-flight response brought on by seeing the medics wheel Michael away on the gurney should be good for a few solid hours of jittery alertness. Yes, I’ve been through this with Michael before, and no, I’m not really worried because our surgeon is the best, but Things Happen. Only fools tell themselves nothing could possibly go wrong and really believe that.

We’ve been told recovery time for this procedure is three to five days. That’s what they tell everybody. My husband is not thrilled about this, because our lives are planned very carefully on a day to day basis. Nursing schedules, what John might be doing, what appointments my husband, my sister, or I might have. I’m really hoping we get to come home by the weekend so Michael can recuperate in his familiar surroundings with all of his comforts.

sqcp.blogspot.com

And this time, I’m going to positively ENGRAVE our name and address on Michael’s enteral feeding pump. During one of our many hospital stays, the staff at that particular hospital sent our pump equipment home with some other patient. We raised hell about that, believe me. The hospital had to send a courier after the patient and parents to recover our equipment and deliver theirs. Different model pumps make a world of difference, especially when the particular formula for the food is different. The formula for Michael’s food tends to thicken up once it’s mixed. That means the tube size on the feeding bag and the related equipment inside the pump had better be matched to the viscosity of the formula. Otherwise the pump jams, the alarm goes off, and Michael doesn’t get fed.

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Finding My Fiction

Who I Am

I'm a professional writer living in Northern California with my husband and two sons. Fantasy in various forms is my reading and writing pleasure. I'm a history buff, a Japanophile, and I love to learn about language(s). I enjoy making jewelry, using natural materials such as wood, bone, semiprecious stones, and seashells. I collect bookmarks and wind chimes.